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Re: How's it going Thip?

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"Seymore4Head" <Seymore4Head@Hotmail.invalid> wrote in message 
news:u877ua9oil1suhdnhvtlimpjggtrmo2ide@4ax.com...
> On Sun, 30 Aug 2015 18:48:13 -0400, "Thip" <me@privacy.net> wrote:
>
>>"Seymore4Head" <Seymore4Head@Hotmail.invalid> wrote in message
>>news:pgm6uah1e7q9tc49t851a6890913j76s7l@4ax.com...
>>> On Sun, 30 Aug 2015 14:40:35 -0400, "Thip" <me@privacy.net> wrote:
>>>
>>>>"Seymore4Head" <Seymore4Head@Hotmail.invalid> wrote in message
>>>>news:18i4uahoh2gnhg4tc9a9n1i86ecnobdfus@4ax.com...
>>>>> I was at Emory today taking an MRI.  I was wondering how you and Jimmy
>>>>> Carter were doing.  :)
>>>>
>>>>I think I'm doing better than poor Jimmy.  I have 2 months left,
>>>>undetectable at 4 weeks and have remained that way.  I had to do battle
>>>>with
>>>>my doctor over taking Laculose and Xifaxan (which I refused), but my
>>>>ammonia
>>>>is now well within normal limits.  I'm trying not to worry about 
>>>>relapsing
>>>>(Harvoni is almost too good to be true), but other than that, life is
>>>>good.
>>>>How are things on your end?
>>>
>>> I just found out I have colon cancer.  Hopefully they can cut it out
>>> and at the moment, they don't expect me to have to do any chemo.  I
>>> also just found out I have osteoporosis from long term use of
>>> Prednisone.
>>>
>>> That Laculose is some pretty nasty stuff.  I did take it, but I took
>>> much less dosage than I was prescribed.  I had to google Xifaxan.   So
>>> you are experiencing encephalopathy?  Are they asking you not to
>>> drive?  The never took my license away but they did recommend that I
>>> not drive.
>>>
>>> I guess I shouldn't have included a smiley face when talking about
>>> Jimmy Carter.  He is the most recent celebrity I know of going to
>>> Emory.
>>>
>>I've always said Carter is a very, very good man, just a very bad 
>>President.
>>I sure don't wish him any ill.
>>
>>I honestly don't know if I have encephalopathy or not.  My ammonia was 
>>high.
>>They just called and told me to take these two drugs.  So I did, and I got
>>extremely sick.  I called, they told me to stay off them a week and try
>>again.  So I did, and got extremely sick.  I went in for my regular
>>appointment but saw the PA, and he discontinued the Xifaxan.  I asked him 
>>if
>>I had HE and he told me to ask Dr. West (how?!).  They drew some blood,
>>called a few days later, and told me to start the Xifaxan again.  I did, 
>>and
>>got very sick and very, very lethargic.  One day I set my stove top on 
>>fire,
>>and I just sat there and thought, "Damn, I have to get up and put that 
>>out."
>>That was the day I quit the drugs (this was all over a 3-month period).  I
>>called and told them under no circumstances was I taking them.  Three 
>>weeks
>>later, my ammonia was dead normal and I feel fine.  No one's told me not 
>>to
>>drive.  I'm seeing Dr. West the 9th and I've got my battle armor on.  I am
>>not a happy Mama.
>>
>>I'm so sorry about the cancer.  Sometimes it seems like bad health is a
>>terrible gift that keeps on giving.  I don't know much about osteoporosis
>>since that's one thing I've somehow managed to avoid.  How will they treat
>>you for the conditions?  I assume your prognosis is good since you don't
>>seem to be very upset, or maybe you're much calmer than I am.  :-)  I hope
>>you'll stay in touch and let me know how it goes.  We old farts have to
>>stick together, you know.  By the way, I caught up with Cody and he's 
>>doing
>>well.  He did the Viekira and cleared the virus, and his liver damage
>>reversed considerably.  I used to get so mad at him!  I never disliked
>>him--he was kind of like the bratty little brother that exasperates the 
>>heck
>>out of you, but you love him anyway.  Elmo and Waterspider are also doing
>>very well.  Cactus Jammies is taking Harvoni and I haven't heard much from
>>him lately.  Sourdough got mad at me and unfriended me, but I haven't yet
>>really figured out why he was so mad.  High ammonia, maybe?  :-)
>>
>>
> I am glad to here that there are a few more options on treating HepC
> than there was in 2000.  I learned that I HepC and end stage liver
> disease at the same time.  At that time, I was told that my liver was
> too far gone to talk about any HepC treatment.  It is good to hear
> that treatment can prolong the damage and even reverse it.  If you are
> undetectable at 4 weeks, that is a pretty good sign.  So you have been
> taking treatment for 4 weeks plus 2 months?  Three months total
> treatment?  Things have changed.  When I did HepC treatment around
> 2004, I went 10 months with one drug which lowered my count but not
> cleared and switched to another drug and went a full year (cleared at
> 4 weeks too).  Don't ask me what the drugs were.  I would have to look
> them up to remember.  I do remember that part of the treatment was
> Ribavirin.  I guess they no longer use that nasty stuff.  I hope not.
>
> Setting your stove on fire seems like it could be related to
> encephalopathy.  Staring at the fire long enough to have to consider
> putting it out also seems like it could be encephalopathy.
>
> As for my osteoporosis my doctor scheduled my return visit too soon
> and the test results had not got back from the lab.  I only learned
> about it after I got the results back in the mail.  I will have to
> make another visit to find out about treatment.
>
> A lot of my current health problems come from drugs I have taken for
> HepC and anti-rejection.
>
> I have no problems with Jimmy Carter as a president or as a person. He
> seems about as honest as you can be and still be a politician.  The
> only reason I mentioned him was that he could have been someone I
> could have bumped into while at Emory.

They still use ribavirin.  Nasty drug!  It's park of the Viekira Pak and 
some doctors prescribe it along with Harvoni.  There are also some poor 
souls doing the the old interferon/riba regimen.  I belong to a worldwide 
hep c support group on FB and the variety of drugs and prescribing is 
mind-boggling.  I've noticed the trend in new drugs is targeting the 
specific  genotype, rather than one-size-fits-all.  Harvoni is especially 
effective against 1a.  It's encouraging, but the drugs are so expensive that 
only the very sick have access to them.  My treatment would have cost 
$189,000 out-of-pocket, but so far I've been charged a whopping $6.06. 
There appears to be a thriving industry in India marketing them, because 
they cost as little as 1/100.

I'm doing Harvoni for 24 weeks due to my 3 previous failures.  I started in 
June and will end in October.  And yes, what happened to me sounds like HE, 
but the fact remains I was far more active and alert off the drugs (before I 
started, high ammonia and all), and I became more active and alert once I 
quit them.  My doctor's office said my reaction to the stove fire was 
probably due to high ammonia levels, but when I actually took the blood test 
3 weeks after stopping the drugs it was dead normal.  Yes, that could be the 
drugs finally working, but at the time of the fire my ammonia was only 
slightly elevated.  I was just plain sick as a dog.  The extreme lethargy 
was only one part of it.  I decided then, and believe now, that life isn't 
worth living if I can't live.  Sitting on the sofa is not living.  I won't 
take the Xifaxan or Laculose again no matter how much they threaten me with 
all those dire consequences.  I'm 62 so there aren't all that many years 
left.  I'll take my chances.
> 

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Thread

How's it going Thip? Seymore4Head <Seymore4Head@Hotmail.invalid> - 2015-08-29 20:07 -0400
  Re: How's it going Thip? "Thip" <me@privacy.net> - 2015-08-30 14:40 -0400
    Re: How's it going Thip? Seymore4Head <Seymore4Head@Hotmail.invalid> - 2015-08-30 15:47 -0400
      Re: How's it going Thip? "Thip" <me@privacy.net> - 2015-08-30 18:48 -0400
        Re: How's it going Thip? Seymore4Head <Seymore4Head@Hotmail.invalid> - 2015-08-30 20:59 -0400
          Re: How's it going Thip? "Thip" <me@privacy.net> - 2015-08-31 09:04 -0400
            Re: How's it going Thip? "SF" <SF@example.nl> - 2015-09-01 18:17 +0200
              Re: How's it going Thip? "Thip" <me@privacy.net> - 2015-09-01 12:55 -0400
                Re: How's it going Thip? "SF" <SF@example.nl> - 2015-09-02 13:33 +0200
        Re: How's it going Thip? greyhackles <greyhackles@NOSPAMyahoo.com> - 2015-09-02 00:11 -0400
          Re: How's it going Thip? "Thip" <me@privacy.net> - 2015-09-02 19:01 -0400
      Re: How's it going Thip? "SF" <SF@example.nl> - 2015-09-01 18:20 +0200
        Re: How's it going Thip? Seymore4Head <Seymore4Head@Hotmail.invalid> - 2015-09-01 15:07 -0400

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